Preparing For The Looming Dementia Crisis

This is TALK OF THE NATION. I'm Neal Conan in Washington. The number of us affected by dementia, nearly five and a half million for Alzheimer's alone, can only go up as the huge cohort of baby boomers ages. Doctors and researchers have thus far made more progress toward early diagnosis than to any effective treatment, but institutions, from long-term care facilities to state and federal agencies to doctors' offices, seem unprepared for what science reporter Stephen Hall describes as the dementia plague.

And another American institution will be on the front line: the family. We want to hear from those of you living with dementia now. What advice do you have for the next generation? Our phone number, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Later in the program, teaching American slang in China, but first the looming dementia crisis. Stephen Hall joins us by smartphone from his home in New York. He's an adjunct professor of science journalism at New York University and Columbia University, and nice to have you with us today.

STEPHEN HALL: My pleasure.

CONAN: And what is the scale of this problem?

HALL: It's enormous. One of the people with whom I spoke with on this story basically said the scope of the looming medical care disaster is beyond comparison with anything that has been faced during the entire history of humanity. That's a broad claim, but obviously it sketches in the dimensions of this potential looming problem.

CONAN: And are people preparing?

HALL: Well, medically we certainly have been throwing a lot of money and a lot of effort and sweat at the problem. So far, those efforts have not yielded any medicines that might significantly alter the course of the disease, specifically Alzheimer's but all dementias in general.

And there was a bit of a gloom that kind of fell over the medical community over the summer because several highly publicized clinical trials did not meet their endpoints, did not achieve success, and so people were a little bit disappointed by that. However, there are some prospective drugs in the future that look somewhat interesting, but it's going to take a while to find out if they're going to work or not.

CONAN: And we may hit that point of gloom again. You never know with these things until they finally test out. In the meantime, there are all kinds of institutions, from, well, Congress down to your doctor's office, that have to be prepared for, well, important changes.

HALL: It's only going to be - it's already a problem. It's only going to get worse as time goes by, and that's because more people are living to an older age, and that's mostly just because we've been good about public health and vaccinations and so on. So people reach elderly age.

But the vulnerable population, the population at risk for Alzheimer's and dementia in general, is people over 65, and there's going to be two billion people in the not-too-distant future who are going to be vulnerable to the disease. So it's a huge number. If you project that as to walking into a doctor's office, you can get a sense of the dimension of the problem.

CONAN: Two billion people worldwide.

HALL: Exactly, I'm sorry, yes, it's a global population number.

CONAN: And it seems interesting that there has been progress towards earlier forms of diagnosis. So you know you're in trouble a little bit earlier, but there's still nothing anybody can do about it.

HALL: The insidious thing about dementia, and Alzheimer's in particular, is that the disease process begins years and years before a patient actually walks into the doctor's office with detectable symptoms. So we're talking 20, perhaps 25 years before symptoms appear, the disease process has begun. And by the time you do appear at the doctor's office, for the most part there's not much that can be done to forestall or even delay the process a little.

So there's been considerable effort to be able to detect earlier on the onset of the disease process through brain imaging. You can do a spinal tap for example and begin to see some signs that the process may be entrained. But this also means that to find the right kind of medicine and more importantly to intervene at the right time means being able to detect these early changes, and intervening then.

And that brings up a whole other dimension of problem in the sense that you're essentially treating more or less healthy people years and years before they actually develop the disease, and there are risks, obviously, that entail with treating people with heavy-duty drugs that far in advance of the onset of symptoms.

CONAN: Insurance companies are not thrilled about the idea of paying for medications for people who are not, quote-unquote, "sick."

HALL: Well, the analogy that's often made is that this is something like the statins, which are the drugs that are widely prescribed to prevent the buildup of cholesterol and therefore to prevent heart attacks and cardiovascular disease. The analogy may turn out to be true, but I think we just don't know the - we don't have the evidence yet to say that that actually is and will be the case.

And these medicines will not be cheap, of that we can probably be pretty sure.

CONAN: Our guest is Stephen Hall, a contributor to the New York Times Magazine, The New Yorker and Scientific American, author of "The Dementia Plague" for the MIT Technology Review. We want to hear from those of you living with this now. What advice do you have for the next generation, where this problem is going to be more acute? 800-989-8255. Email talk@npr.org. And let's start with Julia, Julia's with us from Louisville in Kentucky.

JULIA: Yes, hello, thank you. My father was actually diagnosed with Alzheimer's October of my senior year of high school, and that was in 2000, so this is our 12th year dealing with the Alzheimer's problem. And he was the first one in his family to ever show any signs of this. So we were really kind of caught off-guard and unprepared for this.

Once the diagnosis had been made, like your guest was saying, there's not a lot you can do to stop it, but you cannot prepare enough in advance, preparing for the day when you can no longer feed yourself, when you can no longer walk, when you stop talking. You need an incredible support system.

You're going to have rearrange your house. You're going to have to get medical beds and lifts and wheelchairs and all kinds of things in your home. You're going to have to have people come and help bathe him. And you just have no idea the physical and emotional toll, as well as the financial, that this can take on a family.

And we've been dealing with this for 12 years, and my mom still has my dad at home. She says she will never put him in a home. He is going to be at home until he is no longer with us. And so you just - you need an immense support system both financially and in the physical sense. And so you just cannot prepare enough for this.

CONAN: And the price, money's easier to calculate than the emotional price.

JULIA: Oh, immensely. I mean, I'm not sure of the exact financials because my mom runs primary on that. My sister and my husband and I are the secondary line of defense for my dad. But I just know emotionally, my mom has lost so many friends because she is just so isolated because she can't leave the house because my dad can't leave the house.

So she can only leave if someone stays with my dad. She can only be gone for so long because the cost of getting someone to stay with him is so, you know, incredible. And the quality of people is directly related to the costs of having them. So, you know, if you're only paying sub-par amounts, you're going to get sub-par care for your loved one. And it's so hard to reconcile what you can afford with what they deserve.

CONAN: Any one piece of advice, Julia?

JULIA: Prepare. Think in advance. Think, you know, this is a degenerative disease that goes - you know, my dad's essentially healthy. So I mean, he could be with us for another 20 years. But he already can't talk, he can't walk, and so we just - you have to prepare for all the things you know are coming. And you can never prepare enough in advance to know what's coming because it is all coming.

And most likely it will catch you off-guard. One day he will be fine and talking to you; the next day he stops talking, and he smiles and laughs occasionally, but the person you know is there only in flashes. So think in advance, think what's coming and be ready for it because it is unrelentless and impossible to watch and be unprepared for.

CONAN: Julia, our sympathies, and we hope things go as well as they can.

JULIA: Thank you so much. Good luck to everyone.

CONAN: Thanks very much for the call. Yeah, thank you, I think we're all going to need it. Joining us now from the studios of member station WFPL, also in Louisville, is Claudia Fine, she's a social worker and geriatric care manager, also chief professional officer of Senior Bridge, a national care management and home care company that provides elder care services. Good to have you with us today.

CLAUDIA FINE: Thanks for inviting me.

CONAN: And I suspect that Julia's message is not lost on you.

FINE: Not at all, and she actually has essentially captured the experience of what many families go through, you know, very eloquently. You know, I couldn't agree with her more. Preparation both from a kind of, you know, concrete way but also an understanding that, you know, basically this is part of our new life cycle, is something that we all have to think about.

You know, the good news is that people are living longer, and the bad news is that people do develop illnesses that they didn't have before when they died of more acute illnesses, such as, you know, sudden heart attacks and strokes.

CONAN: And preparation, what does that entail beyond the obvious things that she said about preparing your house, about trying to prepare your finances?

FINE: Well, I think actually preparing your - emotionally for the fact that, you know, it happens to 80 percent of the people over the age of 85. So the likelihood of someone who survives past 85 is that they will have some form of dementia.

So if we all can sort of wrap our minds around that, we can begin thinking about it. We can start seeing it not as something that, you know, we wish we could avoid but that we won't avoid and start planning for it financially and start gathering, you know, our wishes, you know, planning for, you know, you know, health directives, assigning health care proxies and getting professional advice.

I think that one of the things that Julia mentioned was that her mother was so, you know, isolated. That can be avoided if one can start anticipating that it's important for the caregiver to remain connected in the world so that they can remain strong and remain - have the strength to sort of take care of their loved ones.

So finding those resources; looking into getting, like, financial advice, going to an elder law attorney, getting a care manager involved. All of these things early on can help.

CONAN: We're talking about the dementia plague: It's coming. And we're talking with our guests, Stephen Hall, a contributor to the New York Times magazine, author of "The Dementia Plague" for MIT Technology Review. You also just heard Claudia Fine, a social worker and geriatric care manager, chief professional officer of Senior Bridge.

We would like to hear from those of you living with dementia now. What advice do you have for the next generation? 800-989-8255. Email us, talk@npr.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

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CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. Our guest, Claudia Fine, just mentioned that 80 percent of those 85 and over will develop some form of dementia. That segment of the population, 85-plus, is the fastest growing demographic in the U.S. Dementia is already a huge health care problem, as many Alzheimer's patients end up in the hospital, often repeatedly.

It's a problem for families, too, of course, who have to make decisions for family members who can no longer care for themselves, about treatment, care facilities, medications and much, much more. If you're living with dementia now, if you've been diagnosed, if you're caring for a family member, what advice do you have for the next generation?

800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION. Stephen Hall, an adjunct professor of science journalism at NYU and Columbia, is with us; and as we mentioned, social worker and geriatric care manager Claudia Fine. Let's see if we can go next to Daniel, and Daniel's on the line with us from Houston.

DANIEL: Hello, Neal.

CONAN: Hi.

DANIEL: I was - my brother-in-law, about 10 years back, had a fall-related dementia set on. He had fell 25 feet through a roof. And we cared for him with his wife for I think it was about 10 years before he finally passed on. And my - what would be his son-in-law now has frontal-lobe dementia, and he's 53. And it started out, we didn't realize it at the time, but he was repeating stories over and over.

And we didn't understand what was going on, but he was diagnosed about a year ago with dementia. And the best advice that I could give any family member who's dealing with this is it takes an immense amount of patience and calm to deal with changing situations and moods.

CONAN: And the flipside of that is immense frustration and pain.

DANIEL: It is very frustrating. It takes a lot of emotional control because, you know, you're dealing with someone whose cognitive ability, you know, they don't understand the simple phrases that you are using. And he has a ravenous appetite. So we have to keep an eye on him all the time.

CONAN: So that is an eccentricity that you could be living with for the next 20 years.

DANIEL: Right, well, it's my niece who - well, it's a family effort. He still lives with my niece and my sister-in-law, whose husband passed. But our family, you know, we're all there together. And whenever they need to time to step out, well, we step in.

CONAN: All right, Daniel, good luck, thank you.

DANIEL: All right, thank you.

CONAN: And Stephen Hall, as he mentioned, there are other forms of dementia. We of course focus on Alzheimer's because I think that's number one, but lots of ways to develop this, unfortunately.

HALL: Yeah, and that brings up a good point. We think of dementia simply as Alzheimer's, but there are definitely other forms of it. And one of the things that you hear clinicians say is that not all Alzheimer's patients, for example, are the same. They present with different symptoms. The causes of dementia can be mixed. There can be vascular issues, that is a blood vessel in the brain bursts and consequently causes dementia.

There are some cases that kind of mix Alzheimer's with some of these other causes. So it's actually an extremely difficult diagnosis to make, and clinicians sometimes feel that it's kind of a broader disease definition than sometimes the research community appreciates.

CONAN: Here's an email from Francis in Sonoma County, California: My father lived in Nevada, I in California. He chose a senior facility prior to suffering from dementia. However, managing his care and just checking up on his well-being was impossible from a long distance. Unfortunately, the facility failed to care for him and continued to increase their fees as his dementia worsened.

I warned family members that although it's draining, try to have your family member near so you can check on the care, food and stimulation your loved one is receiving, including checking the state for the record of the facility. I fear for those who haven't family members to check up on them regularly.

Also, people become creative covering up their failings. So they may be deteriorating sooner than detected. He's now close by, we see him daily. The facility is very good and offers a lot of stimulation, although his dementia, it's taking its natural path.

And Claudia Fine, that raises the question among the institutions. Yes, some people will be cared for at home, others will be put in long-term care facilities of various types. Are they ready for this plague?

FINE: Well, I think that our concept about assisted living is really not, you know, right - they're not necessarily appropriate for dementia except those that are defined as dementia units. Assisted living is somewhat of a brick-and-mortar. It originally started, you know, with a hotel concept, leisure home concept. Unfortunately, dementia is a degenerative, progressive illness, and so you enter in an institution in one state, and then your functional - you functionally decline, and the institution, you know, can't really maintain your care without additional support for you.

And then the costs raise. And so families aren't really prepared for that. And because we're selling the facility, we want to bring people in. And I'm not, you know, in any way bad-mouthing assisted living, I'm just saying that there may not be the best place for people with dementia.

I do agree with, you know, the individual that said have somebody - try and keep people, you know, close by. At least have someone there to monitor the care. Now there are professional care managers - that's what I did - that actually help long-distance caregivers know what's going on with their families. But there's a cost associated with that.

Interestingly enough, I think that, you know, health care in general is recognizing that if we can keep people with dementia sort of stable, and actually this brings us back to something that was said earlier, that there's nothing you can do once someone has dementia, well, not exactly.

When someone has dementia, they're also at risk for other chronic illnesses and other, you know, accidents and diseases, and then they end up getting sicker, and they end up needing, you know, more acute care, and the stress on the individual and the family is enormous.

So really what you can do for people with dementia is to keep them as safe and as connected and as socially engaged as possible. So, you know, that's where I think, you know, families need to focus their attention.

CONAN: Here are some messages we got on Twitter, @totn is our account there. From DresdenPlaid: Write it all down. Help loved ones record memories digitally. Never stop loving. To the next generation of caregivers, DaphneGurel says: Maintain a strong support system, family, friends, professionals, et cetera. And a tweet from GDRPempress: Fight to see the humor in small moments.

Let's go next to Belinda, Belinda with us from Oakland.

BELINDA: Hi, I'd like to talk about the nursing home industry side of it. My dad is in his mid-80s, and he also has a vascular dementia brought on by a fall about five years ago. And he had significant dementia and is in a nursing home. And I also did bring him across country so that I could look after him. Otherwise I don't know what would have happened.

But what I have discovered over the past couple, few years is that the nursing home industry, because it's so profit-driven and always wants to keep their staffing as low as possible, and so they give the aides too many patients. Really what the industry wants to do is keep the patient just compliant and easy to handle.

And so they tend to overdrug them, and it's really an epidemic, particularly I know in California, and they use antipsychotics, and there's no psychosis in, you know, dementia. But they use them because they're major sort of tranquilizer, brain-scramblers. But it takes away the person's identity. And I really had to file complaints with the state and so on to stop them from drugging him and do other things to address his, you know, behaviors of, like, sundowning and some agitation.

And when they drug people like that, it takes away their last years. They become zombies, and they're in a stupor. But now since I've been able to stop them from overdrugging him, my dad has come back. You know, I still have a relationship with him. His personality returned. But if I were not an advocate by nature, he would just be left in bed like I see them do with so many others.

And, you know, they'll just feed them and just treat them like baggage, you know, like it's like a sci-fi movie so that they can get the payments until the person dies. So next generation, I would really look at what the nursing home industry is - I'm not talking about assisted living - nursing homes that because they're profit-driven, you don't want to end up like that. So that's a problem.

CONAN: Stephen Hall, have you looked into this aspect of the health care system, whether it's all ready for what you describe as the dementia plague?

HALL: Actually, I have not looked at the nursing home situation or that aspect of it. However, I'd just like to make the point. We always tend to think of these things in terms of the economic costs, and there's certainly been calculations about how much the dementia plague is going to cost. They're projecting health care costs of, I think, a trillion dollars a year by 2050.

But as all these callers suggest, it becomes an all-consuming thing in one's life. When a loved one develops or is diagnosed with dementia, then obviously it has an economic cost because you're not doing other things because the care requires so much time and also psychic energy. But the emotional toll is absolutely enormous, as I think some of these calls have also indicated.

And you multiply that now by five million cases of Alzheimer's in the United States - currently that number also destined to rise - you again get a sense of the emotional toll that this disease will exact or exert on families, extended families, as well as the medical and health care system.

CONAN: Let's see if we can go next to Lauren, and Lauren's with us from Indianapolis.

LAUREN: Hi. Thank you for taking my call. I'm enjoying the subject.

CONAN: Thank you.

LAUREN: My dad had - Mom and Dad both had dementia diagnosed, not Alzheimer's. Dad, for the last two years of his life, was in a nursing home. Before that, he was at home with Mom, and she did her best to care for him. But she's only six years younger than he was. He was 84 when he died.

It took a toll on her. She - her dementia, I think, in part was mini-strokes that she'd had over the years, and I think that hastened hers, dealing with the stress with Dad. So I guess my recommendation to others is if you've got the youth and the strength and some know-how, and you want to try it, go for it.

But one caution. We put Mom in with big brother and his son, a teenage boy, for eight months before we put her in a nursing home. He says I think I can handle her. Well, he could up to a point, but then he realized he didn't have the training. But the other issue we had was police were knocking on the door because the neighbors said, told the police, we think he's abusing her.

Sometimes you have to physically restrain them or physically get them to eat or put them in the tub. Sometimes they become agitated, and you have to, if nothing else, then protect yourself. Any bruises on them or the first time you get out in public and they say he hit me, how do you defend yourself?

CONAN: Claudia Fine...

LAUREN: That's part of why the nursing homes are doing the medication to keep them calm.

CONAN: I understand.

LAUREN: It protects them legally. This is a big responsibility and a big liability.

CONAN: I wanted to bring Claudia Fine in on this.

FINE: Yeah. I mean I have to say that there is a lot of information out there, and maybe we in the industry, we as health care workers, are not doing a good enough job of letting people know that there are more solutions. I completely agree that the stress on a spouse caring for somebody with dementia is enormous.

But getting some professional support from a care manager, from, you know, the nurse and the doctor's office, from the Alzheimer's Association, from support groups, you know, online, can really help. I think you mentioned that, you know, that the son-in-law didn't have the professional know-how to handle agitation. Well, it's true. I mean a lot of people don't, but they can be taught, and they can be coached.

I think, you know, now I know that, you know, some of the insurance companies are looking - you know, Humana for one is looking at how to support families in their caregiving responsibilities by having care managers, you know, go into the home, make home visits, work with the caregiver and the identified, you know, patient, to set up structures in place so that people can be better managed.

Families should not have to do this alone, and there are enough resources. And if they're not, then we need to reallocate resources. We spend a lot of money in terms of trying to find a cure, but how much have we really spent in terms of care? And I think that's what we have to look at.

And you know, unfortunately, the care isn't as exciting as scientific discovery. And believe me, I hope that there's a cure. I don't want to be among those. But I do think we do need to invest in the basic care, you know, teaching people how to talk to people.

CONAN: Claudia Fine is a social worker and geriatric care manager. You're listening to TALK OF THE NATION from NPR News.

And this email goes right into it, Victoria in Rochester, New York: Do you folks know how much assisted living costs? This discussion is great for folks in the upper middle classes, upper middle and upper classes. But for many the only option will be a nursing home after we've fallen or been admitted to a hospital for some reason. Medicare, Medicaid covers nursing homes only after hospitalizations. For many of us, the outlook is bleak. This entire discussion seems to assume that we're all well enough off to afford decent care. That is not the reality.

And Claudia Fine, that is not the reality.

FINE: No, you're absolutely right. It is not the reality, and unfortunately our society has not developed a long-term care program. I mean Medicaid is - the only reason why nursing homes are available is that Medicaid covers nursing homes. But we can rethink that. You know, our policy makers can rethink what they want to spend their money for. Do they want to spend their money on nursing homes or perhaps they want to spend the same money on support for families. New York City did have a very vibrant, you know, Medicaid home care, you know, program. It still does. And there are people who basically can be supported at home. Unfortunately, you know, it's been cut over the years. But Medicaid still does pay for in-home care in New York City - not in other places. So it really is, you know - you know, you have to vote differently. You have to think about, you know, speaking to the lawmakers about making different choices.

CONAN: Claudia Fine, a social worker and geriatric care manager, joined us from member station WFPL in Louisville. She's also chief professional officer of Senior Bridge. Stephen Hall, an adjunct professor of science journalism at New York University and Columbia. His piece, "The Dementia Plague," ran in the MIT Technology Review. Stay with us. TALK OF THE NATION, NPR News. Transcript provided by NPR, Copyright NPR.